Nobody Knows

ALS is a phenomenon that mutated my great grandmother's genetics. She passed the ugly disease onto her children. My mother and two of her first cousins inherited the gene, and were taken by the disease. ALS ravaged my mother's body, stole two years worth of smiles, the ability to eat her favorite peach pancakes and all the weight from her slight body until she was only 45 pounds. She died as peacefully as she could in her husband's arms, but her battle against ALS was anything but peaceful. Eleven years after my mother's death, I am still battling ALS. Most people I talk to don't even know what ALS is. They don't know that there is no cure, no treatment, no cocktail of miracle pills, no therapy, no government funding for research to even FIND any of that. Nobody knows that ALS is an orphan disease. Nobody knows that it costs an average of $250,000 a year to care for a person with ALS (PALS). Nobody knows that military Veterans have a 60% greater chance of developing symptoms of ALS due to exposure to vaccines and other unknown variants. Nobody knows that the government has finally realized their grave error and is now funding Veteran's care. Nobody knows that some family's are forced to suffer loss after loss to ALS because of the mutation in the SOD1 gene and others. Nobody knows that upwards of 500 advocates gather yearly in Washington, DC to raise government awareness of ALS. Nobody knows that the reason we are an orphan disease is for the plain simple fact that ALS does not let us live long enough for our ALS ACCENTS to be heard or counted!Today, I am very excited to hear that my Oregon Governor, Ted Kulongoski, has officially declared May to be ALS AWARENESS DAY. Maybe this will make a difference in the awareness of this 'horrible life stealing without a chance' disease called ALS.